HOW YOU CAN HELP YOUR CHILD WITH CEREBRAL PALSY CBM is one of the world s largest international disability and development organisations, committed to improving the quality of life of persons with disabilities in the poorest countries of the world. Based on its Christian values and over 100 years of professional expertise, CBM addresses poverty as a cause and a consequence of disability, and works in partnership to create a society for all.
About cerebral palsy Definition: cerebral palsy is damage to the brain causing problems with movement and posture, and often communication, feeding/ eating, seizures, learning, and behaviour. Sometime cerebral palsy affects only one side of the body. In most cases, we do not know what causes cerebral palsy. Cerebral palsy is not caused by a curse or witchcraft. There is no medical cure for cerebral palsy. It is more important to accept the condition and help your child live with it. Try to make your child as independent as possible. Cerebral palsy is not contagious. Questions to ask: Why can respiratory problems occur in a child with cerebral palsy? (Possible answer = posture) Why do many children with cerebral palsy suffer from malnutrition? (Possible answer = difficulties with feeding/eating) 2
About cerebral palsy Movement Posture Feeding/eating Communication Seizures Learning Behaviour
Early identification of cerebral palsy Young babies may show some of these signs: Stiffness - In some positions, like lying on the back, it becomes difficult to bend the baby s body, to dress or cuddle him. - Your baby is difficult to handle in some positions, like lying on his back. Floppiness - Your baby s head flops and she cannot lift it. Her arms and legs hang down when she is held in the air. The baby moves too little. Question to ask: Have you seen any of these conditions before? Slow development - Learning to lift his head and to sit takes longer than expected, and he may neglect some parts of the body. Poor feeding - Sucking and swallowing is poor. Your baby s tongue pushes the milk and food out. She has difficulty closing her mouth. 4 Unusual behaviour - He may be a crying, irritable baby who sleeps badly. Or he may be a very quiet baby who sleeps too much.
Early identification of cerebral palsy Stiffness Floppiness Slow development Poor feeding
Early intervention Do not delay getting your child helped. Get care for your child as early as possible. Get your child assessed at a health centre. Ask about special places and community projects that help children with disabilities. Ask where to find people with special training in helping children with disabilities. Treatments happen in the home, not the hospital. Parents and caregivers can learn how to take care of children with cerebral palsy at home. Question to ask: Do you know special places in your district where children with disabilities can be helped (rehabilitation centres)? Do you know where people with special training for children with disabilities work (physiotherapists, occupational therapists, special teachers, language therapists)? 6
Early intervention Rehabilitation therapist Care at home
Communication Look, talk, touch, and sing to your child often. Tell your child what you are doing. Give your child choices: - Yes/no, gestures, point, use communication boards, smile. Use single words and simple gestures. Give time for your child to respond. Do not force a child to speak. Question to ask: What are different ways of communicating? (Possible answers include: talking, touching, gestures, facial mimicking and body language.) 8
Communication
Feeding Positioning: - Hold your child in an upright position. - Turn your child s body towards you as far as possible. - Stablise the child s head in a neutral position. - Support the jaw. Introduce food of different textures: Children with swallowing difficulties may need thicker food. Give small bites of food with a high nutritional value. Question to ask: Why do we sometimes use jaw control while feeding a child with cerebral palsy? Can you list some examples of foods of different textures? Encourage your child to feed him/herself. 10
Feeding No Yes A B C
Positioning Carrying your child - Carry her in an upright position. - Bend his hips and knees. Helping your child to lie down On her stomach: - Place a roll, wedge or cushion under your child. On his side: - Keep both arms forward. - Bend one hip and knee. Question to ask: Why is positioning important for children with cerebral palsy? (Possible answers include: avoiding contractures, supports activities, communication and feeding.) Sitting Using a special chair: - Keep your child s feet flat on the floor. - Keep the bottom level against the back of the chair. 12
Carrying your child Positioning Lying Lying Sitting in a chair
Standing and walking Children need to hold onto something to stand and walk. Let them stand holding on to furniture. Make simple parallel bars to teach them to walk. After your child can pull to stand with help, teach him to do it alone. It may be easier for your child to stand from a chair, rather than from the floor. Question to ask: Find more ways on how to support standing and walking. Help her to learn the correct movements. To take a step, she needs to put her weight on one foot while she lifts the other. Many children will take a long time to learn to walk alone. They may need the help of braces or equipment. 14
Standing and walking
Daily living activities Stimulate your child to do the activity by herself Eating and drinking: Let your child try to feed himself. She should sit in a good position alone in a chair or stool. He may need to use a spoon with a thick handle to make it easier to hold. Using the toilet: When going to the toilet, encourage your child to help as much as possible during undressing and dressing. Make something, like a bar, for the child to hold onto. Use a box or special chair for her to sit on. Question to ask: How you can make the handle of a spoon thicker so it is easier for your child to hold? (Possible answer = wrap material around it) Are there any other ways, other than the examples shown in the picture, to support a child with cerebral palsy when using the toilet? 16
Daily living activities Eating and drinking Going to the toilet
Dressing and washing Stimulate your child to do the activity by herself Dressing: A child can learn to dress lying on his side. Sitting in a corner against the wall can help with balance. Allow your child to hold onto things if needed. Washing: Encourage your child to wash himself. When the child learns to wash himself, he may need to hold onto things for support. Question to ask: What other positions for dressing and washing will help your child be as independent as possible? 18
Dressing and washing Dressing Dressing Dressing Washing
Play Play helps your child develop properly. Encourage your child to move both her arms together and separately. Work on holding toys and releasing them. Encourage your child to play in different positions. Encourage other children to play with your child. Question to ask: In what other positions can you encourage your child to play? (Possible answers include: sitting, kneeling, or /standing.) 20
Play
Seizures Learn to recognise possible warning signs that a seizure will begin. These warning signs can include a change in your child s mood, your child being suddenly afraid or suddenly crying. During a seizure, protect the child but do not force movements. If needed, lie your child on their side. Do not put anything in the child s mouth. Turn the child s head to one side. Question to ask: A child who has had a seizure must be seen by a medical doctor. Do you know why? Go to the clinic for medication and follow-up with the doctor about medications. A child with seizures does not have an evil spirit or a curse. 22
Seizures
Your child s behaviour Your child needs love and attention. A child who feels loved will behave better. Make your instructions clear. Don t give too many instructions. Stick to the rules. Be consistent. Reinforce the behaviour you want. You do this by: Giving a reward after the desired behaviour. This could be a kiss or a snack. Praise the behaviour, not the person. Discussion topic: Let s discuss the effects that physical punishment could have on a child. Ignore behaviour you do not like. Physical punishment does not teach good or correct behaviour. Do not spank or beat your child. 24 For behaviour you cannot ignore, try time out. This means taking the child to a safe place where you can see him but away from where the fun/activity is happening.
Your child s behaviour Ignore behaviour you do not like Praise good behaviour Do not beat your child
Helping parents to cope Take time for yourself. Ask a trusted family member or friend to look after your child sometimes. Do not hide your child. Take her outside. Look for parents with children similar to yours. Seek professional help. Question to ask: What challenges do you think parents of children with cerebral palsy face in particular? Teach other children to play and care for your child. 26
Helping parents to cope Look for other families in a similar situation Teach other children to play with your child
Going to school Children should go to school. Talk to your child about what to expect at school. Talk to your teacher, your community-based worker, and community leaders so they can help you. Question to ask: Do you feel that it is possible for your child to go to school? Ask the teacher to: Seat your child at the front of the class where the teacher can supervise. Encourage other children to assist your child at school. Protect your child from bullying. Advise the school on toilet training and other activities with your child. 28
Going to school
Social and community activities Let your child participate in community activities the same as any child. Take your child to social and religious gatherings. Let your child play with other children. Question to ask: How can parents help their child play with other children? Let your child help in the household. Show your community that your child is special and loved. 30
Social and community activities
HOW YOU CAN HELP YOUR CHILD WITH CEREBRAL PALSY Index 2 About cerebral palsy 4 Early identification 6 Early intervention 8 Communication 10 Feeding 12 Positioning 14 Standing and walking 16 Daily living activities 18 Dressing and washing 20 Play 22 Seizures 24 Your child s behaviour 26 Helping parents to cope 28 Going to school 30 Social and community activities This manual was produced in Tanzania by CCBRT and CBM with EU/CBM funding as a component of its joint programme with APDK, Kenya. This programme aims to reduce the prevalence of disabilities and mitigate the effects of impairments through improved maternal and newborn care and greater community awareness. Changing Lives, Changing Communities Empowering persons with different abilities